an autism journey

Living Life as a Superhero

Due to autism, my son’s speech is limited, mostly requesting things he wants or needs. However, as his language continues to progress, we hear the occasional comment. It usually comes out of nowhere and surprises us, amazes us, sometimes makes up stop and think, and always makes us sit up and listen.

Today as we were walking back from church, he matter of factly says to me, “I am a superhero!” That was it, no other words, no actions, no play involved, just the words, “I am a superhero!”

I am pretty sure he really is.

Imagine living life knowing what you want to say, but not being able to express it. Imagine if you are sick, but can’t tell anyone. Imagine having a fear you can’t talk about it. Imagine the questions you would want answered, but can’t ask. Imagine if your entire sensory processing system didn’t work properly, the world is always too loud, too bright, too stimulating, too confusing. Imagine not being able to zip your jacket, or button you shirt; not because you don’t know how, but because there is a disconnect between what you want to happen and what your body will allow. Imagine being made fun of for what you have no control over. Imagine people ignoring you, talking about you. Imagine being frightened, lonely, hurting, wanting to give up.

I am pretty sure that is how the world feels to my son: overwhelming, scary, too hard. The thing is, instead of giving up, instead of becoming angry, instead of listening to all the negative, he carries on. He presses forward, he learns, he adapts, he grows. He takes the impossible and makes it happen. Isn’t that what a superhero does? They have unimaginable problems in everyday life, they have people who don’t believe in them, the odds are stacked against them, but somehow they still manage to do something amazing, and in the process, change the world around them…. A little bit at a time.

That describes my son exactly. When the speech therapist said he would never speak in sentences, he did it anyway. When the so called experts said not to bother teaching him to read, he learned to read anyway. When the other kids said, “he can’t do that,” he showed them he could. He is accomplishing the impossible. He is doing something amazing. He is changing the world a little bit at a time.

Yes, my dear son, you are indeed a superhero.

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A Lesson on Worship

My son taught me a lesson on worship this morning. He has a very difficult time attending church, so we have been trying to just make it through Sunday School. “Just make it through” says it all. It is hard for him to sit still that long. It is hard to concentrate on a lesson that is geared for “typical” learners. It is hard to connect with children that don’t understand why you are different. It is hard to connect with adults who expect you to speak and make eye contact when in reality both are hard to come by.

So, usually at some point, it becomes too much and we leave for home. My son ends up unhappy, and I end up feeling defeated and wonder why I bothered to spend the time getting him up and dressed, pack a bag for every possible problem that might arise, gear up a service dog, and head over to church in the first place. Truly I spend more time preparing for church than being in church.

This morning was no different, we made it through 10 minutes of Sunday School when it became too much and the meltdown began. But this time as we were about to leave, he heard music coming from the sanctuary and wanted to go in and investigate. Too exhausted to fight it, I obliged.

When we entered the sanctuary, he took the first seat nearest the door and sat down. There was no one else in there except for a handful of people from the praise team practicing the songs they would be singing during morning service. I looked over at my son and realized he was calm, quiet, and content. We sat there for a good 30 minutes just listening to the music.

As I sat there amazed at the change in his behavior I realized something. My son was worshipping God in his own way at that very moment and so was I. I could feel God’s presence at church for the first time in a very long time. Not that God hadn’t been there all along, but somehow, I had got myself so caught up in wanting my son to participate in church in the way every other child was that we were missing out on something. And here sat my son as a testimony that there is no right or wrong way to worship in the presence of God. Really what is church supposed to be about any way? It doesn’t matter how long you are there, what room you are in, what type of music is played, or who else is there. It is about you and God.

When the praise team was finished practicing and people were beginning to come into the sanctuary for the start of the actual service, my son wanted to go home, and so we left before church service ever began, but that was ok, we had already been to church and worshipped God, and that was enough.

RESPECT

April is autism awareness month. You might wonder why we need an entire month dedicated to awareness of autism. It is because of comments like what my son had to hear today while playing games with a group of children, “Don’t pick him! He can’t play! He has autism!” It wasn’t whispered quietly in hushed tones, it was said out loud for all in the room to hear, including my son. I can’t help but wonder if those words are spoken so boldly for even his mother to hear, what kind of things are said when there is not someone around to stick up for him. It still stings just thinking about those words coming out of the mouth of another child towards my son.

We need so much more than a simple awareness of what autism is. We need  awareness that EVERYONE deserves to be respected and treated like a human being. It is often difficult for my son to understand the complex rules of social interaction. It is difficult for him to understand what is expected of him in group situations, and it is often hard for him physically to make his body work in the way he would like to be able to play group games such as kickball, baseball, or even tag. He does however desperately want to be included and given the chance to do the best he can. He wants to have friends, he wants to play, and learn, and be accepted like everyone else. NOBODY wants to be left out or treated as if they are less than others.

What do I want for autism awareness month? I want every parent to take just a couple of minutes of their time to teach their children exactly what I just said. That it is never ok to hurt someone’s feelings and that autism or not, every child should be treated with respect and dignity. That and only that is what will make a difference in how my son and countless others like him are treated.

The other day, my son was in a group situation coloring a picture, when one of the other kids said to me “He is not coloring that right. He is just scribbling all over it.” My heart broke. I knew the child wasn’t trying to be malicious. He had simply been taught at some point in time that the “right” way to color a picture was to stay perfectly in the lines, to make it look like everyone else’s. He was just stating what he thought was a fact.

The thing is, the boy did not know how hard it was for my son to simply to sit at that table and focus without rocking back and forth or stimming on the crayon, he didn’t know how hard my son had worked for years to even be able to correctly hold that crayon, or how hard it was for him to verbally ask for a color he wanted. To me, that picture he had been creating was beautiful, because I knew how special it was for my son to be doing what he was doing. But to the other child, it was just scribbles. My son does not have very good communication skills.His receptive skills, his understanding of what others say, however is quite good. He stopped coloring when the child said that and simply looked at his picture with a sad expression and put his crayon down.

I told my son how beautiful I thought his picture was and I told both him and the other child that there is no wrong or right way to color a picture. That is what makes it art, that we each can do it differently and it still be beautiful, but the comments of mine were no match for what my son had already heard.

Words are powerful. They can build someone up or completely tear someone down in less than a moment’s time. I can’t help but wonder how many artists are told in their lifetime that they aren’t doing it the right way. What a boring world it would be if they all listened. Truly life in general is a lot like that, particularly for my son. He may live his life a bit differently than others, but that does not make it any less beautiful. Sadly, I am pretty sure he will continue to hear from those who don’t know better that “he is not doing it the right way.” But, as his mother, I will continue to tell him that it is just as beautiful (if not more)  to color (and live) outside the lines, to hold his head up high, and show the beauty his has to share. Here’s hoping the rest of the world soon learns that lesson too.

It can be hard for kids with autism to learn how to play appropriately and independently with toys.  My son does best with toys that have a set beginning and end. Things like puzzles are great, but it has been a struggle to find other toys beyond that. Below is my top ten list for what has worked for us.

To teach independent skills, I use ABA techniques (thanks to his therapist for teaching me) and begin by breaking it down into small steps that he can have success with. For instance with puzzles, I might have him start by just putting 2 or 3 pieces together or by completing all but the last 2 or 3 pieces for him. Each time he does so, he is rewarded with a small treat (motivation is always key to learning).  After he masters that step (it might take a number of days to do so), I then continue to add a piece until he can independently do the entire puzzle himself. Be patient. It is very important to teach this skill in small enough steps to guarantee success so as not to frustrate the child. Each of the following toys can be taught using this method (use a hand over hand approach helping the child early on if necessary).

1) Melissa and Doug Pretend Pizza Party: This wooden set is sturdy enough to stand up to even the roughest of play. I started by just having my son put on the pizza toppings to an already put together pizza. After he mastered that, we moved on to putting the pizza pieces together just a couple at a time, and eventually he learned to put together the entire set himself. This is now one of his favorite toys. We just recently purchased the very similar Triple Layer Birthday Cake Set.

2) Mister Potato Head: This classic toy works perfectly for teaching independent play. If need be, start with just one piece at a time until that is mastered and work up. This toy also works well for teaching body parts as well as requesting for pieces (verbally, with a device, or with PECS).

3) Fantacolor Junior: This design board comes with 16 pictures (8 double sided boards). The picture is laid under the plastic to which large chunky plastic pegs are placed into holes matching up colors. A very simple, but fun toy to help with colors and creativity, as well as fine motor skills while teaching independent play.

4)Get a Grip on Patterns (Shaked Ed. Games) My personal favorite for independent play. This plastic grip board comes with 12 different designs that can be overlayed onto the board. Small clothespin type pegs are then placed onto the pattern. Great for working on fine motor skills (required to pinch and attach the pegs), colors, and patterns.

5) Lace up Cards: There are many types to choose from. I personally like the Melissa and Doug brand. They are cute, colorful, and very sturdy (essential for us).  Again, this can be catered to your child’s ability. You can begin by having the card all laced up except for the last  few holes if necessary and build from there.

6) Sort n Shape games: I like the one from Orda Industries, but there are many you can choose from. Pick one that comes with picture cards to show the pattern to imitate. The child then simply follows the pattern to place the correct shapes, colors, ect.

7) Perfection: This classic game works well as a more advance shape sorter toy. We use the game without turning on the timer. (This game will require supervision for those children who might put the small pieces into their mouths).

8) Lego Building sets: We like the Duplo sets since the pieces are bigger to handle and less likely to be placed in the mouth. We start out with just a couple of pieces and work our way up to a specific design (be sure to provide a visual picture of the desired design). We work on the same exact pattern/design until it is mastered, rather than just randomly building blocks.

9) Melissa and Doug Farm Blocks Play Set:  We like this particular set, but again, there are many others to choose from. I like this farm set, because it requires the building of the set along with the play of the animals. For us, we just work on building one particular piece at a time, wait until that is mastered, move on to another part of the farm, and finally teach the placement of the animals into the play set. I  placed small Velcro dots onto each piece so that they would stay together and not be knocked down with a minor bump. Trust me, this cuts way down on the frustration level.

10) Guidecraft Sort and Match Construction Trucks (or Flower Garden): Sturdy magnetic pieces attach to the color and shape guided pictures to form a truck (or flower). This toy is great for working on many skills at the same time.

Let your child’s interests guide you in what toys to teach with. Be sure to reward your child for each successful step along the way.

As the mother of a child with autism and a pastor’s wife, I have a passion for special needs ministries. I truly believe the church needs to be willing to adapt and accommodate these individuals. However, the reality is that not all churches have the man power nor the resources to adequately meet the needs of all individuals, and sometimes even with the best of efforts, there are individuals whose needs are just so great, that going to church becomes an impossibility for the individual and their family.

I speak from the heart on this subject, because it seems my own family is on the verge of such a dilemma. We are in a small church, struggling to come up with enough volunteers to serve in children’s ministry as it is, and although I know my son is loved and wanted at church, he is struggling to even be able to sit through church, let alone actually function and thrive in it at this point. By struggle, I mean he is miserably unhappy. He is overwhelmed and overly stimulated.  He cries, he asks to leave, and if all else fails, he bolts from the room. Me chasing him through the church has become an all too common of a site for our church family. We have tried everything we can think of to help him. We have sought the advice of his therapists and implemented many of the techniques they suggested. We have tried visual schedules and limiting transitions. He is accompanied by his faithful service dog, who eagerly helps and provides sensory support, but still, it is not working. At this point, he is sometimes able to sit through one hour of Sunday School (with me as his aide), but anything beyond that, he simply shuts down. He does not talk, he does not interact, he just wants to go home, to get away from the noise, the excitement, the people, the expectations. And so, we leave. It is not the way I want it, but it is, at least for the time being, our reality. I am not giving up, I am continuing to work with him and try new things. I am praying that in time, he will become more able to sit through a service and that one day we will again attend church as a whole family.

It has given me a whole new idea of what a shut in has become in today’s day and age. Most church ministries simply think of shut ins as the elderly and the very ill who cannot attend church. As the rate of autism increases, I think it may be time for churches to think in broader terms when they consider those who cannot attend church. There are more and more individuals and their families dealing with much more hidden reasons to not attend, and those families are being overlooked and underserved by the church as a whole.

So what can the church do? This is a new area for me. I certainly don’t have all the answers, but being in this position myself, as well as seeing it from the perspective of a pastor’s wife, here is my wish list, so to speak, for what churches can do to reach out to these families in need.

1) Discuss with the family what their needs are and be sure there isn’t something the church can do to help the individual with special needs (adult or child) to be able to attend church on a more regular basis. Make every effort to get the entire family incorporated into church, but understand that even with the best intentions, sometimes the needs of the individual might be too great to be served by the church at this time.

2) Accept the family’s decision. Maybe mom might need to come one Sunday and Dad another so they take turns caretaking. Maybe the entire family will need to miss church. Maybe it is a single parent home or one parent works on Sundays. Understand that sometimes difficult choices have to be made, and although the family may want desperately to attend church, it might not be in the best interest of the individual with autism, at least for the time being. Release the family from any guilt that might cause them.  Trust me, as a woman who spent her whole life in church, I can testify first hand that the guilt felt from not being able to attend is great, even if you are doing it in the best interest of your child. God however, knows the needs of these families (and mine). He knows the struggles. He knows their hearts, and it is God’s place to judge, NOT the pastor’s nor the church’s. Let the family know that you miss them, but that you understand why they are not there.

3) Continue to invite (but not pressure)  them to various church activities. Perhaps it is hard for the individual with autism to sit through a service in the sanctuary, but maybe a church picnic outside would be more comfortable way to be involved. Invite them to church egg hunts, Christmas parties, fellowship gatherings, Bible School, any events you might have. Even if they can’t come, knowing they are wanted goes a long way.

4) Visit them. A visit from the pastor or church staff is always appreciated, but sometimes a visit from a Sunday School teacher, a children’s church worker, or just a loving individual in the congregation means much more. Besides the opportunity to visit, it opens the door for the individual with autism to get to know the people in the church in their own safe, familiar environment, opening the door for them to possibly one day be able to return.

5) Send them cards, notes, make a phone call. If the individual with autism is a child, have the other kids in their Sunday School class make cards to send. Acknowledge birthdays and special occasions. Let the individual with autism (and their family) know they are still thought about and loved. Don’t forget to include them in things like a church directory, so that others can reach out to them as well.

6)Bring them recordings of the sermon, video tapes of the children’s church lessons, pictures of events to share with them.  Send them copies of bulletins, sermon notes, Sunday School lessons, Bible Studies, ect.

7)If possible, see if a Sunday School teacher (or other volunteer) would be willing to come out and share a short part of the lesson with the individual with autism. Individuals with autism need the gospel shared with them on a level they can understand and are comfortable with. Do not neglect the spiritual needs of these individuals. I can speak for my son personally. He may have trouble sitting through a lesson and trouble responding, but he takes in far more than he is given credit for. He is quite capable of learning Bible stories, praying, and memorizing verses. At the very least, take out materials from the lesson so that Mom or Dad can teach the child the week’s lesson.

8) Offer a ride to church for siblings of the individual with autism. Be sure to include the siblings in other church events as well. Have a volunteer willing to look after them so that they can participate, and mom and dad feel comfortable sending them.

9) Consider other ways you can help the family. Take out a meal occasionally, bake cookies for them, offer an afternoon of respite care (even if it is just to give mom a chance to catch up on some housework, while a responsible adult plays a game or reads a book to the individual with autism).

10) Last but certainly not least, pray for the family. Ask if there are specific needs you can pray for, and do so faithfully. Let them know that you are praying for them. It truly is a simple task everyone is capable of, but means so much.

Sometimes the time out of church might just need to be temporary while the family works through issues, but even if it is long term, these individuals and their families can still (and need to) play a vital role in the church family. Don’t leave them out, don’t forget about them, and don’t assume someone else will do it. Whether they are in church every Sunday, once a year, or not at all, they can and should still be a part of the church.

Christmas is coming…

My son is impacted severely by autism. He has very limited verbal skills, limited mostly to one word requests and some scripting (repeating words and phrases from things he hears).  The words he does say are often soft and sometimes difficult to understand, but if you listen closely, you will probably hear him in almost a whisper saying, “Christmas is coming…. Christmas is coming.”

He is looking forward to it. We have a calendar that we are using to count down the days. His celebration of the day, however, is often misunderstood by many. It is wrongly interpreted as disinterest or a lack of understanding about the meaning of the day. Those critics could not be more wrong. It is true that he doesn’t celebrate in what has become known as typical, but make no mistake he understands it better than most.

My son doesn’t make a Christmas list. As a matter of fact, he doesn’t ask for a single gift. It isn’t because he can’t…. he often asks for toys at home, or while out shopping in the store. He makes his wants known. He simply doesn’t see Christmas as a time of asking for anything. “Christmas is coming….”

He isn’t too big on all the decorations. He doesn’t like changes to his environment and Christmas decorations are no exception. He certainly enjoys the Christmas tree with all the ornaments that he can pull off one by one, but the rest of the decorations,  he would prefer stay in the box they came from. “Christmas is coming….”

He doesn’t care for a lot of the Christmas carols and usually asks for the radio to be turned off.  If we try singing things like Rudolph or Frosty, he just looks at us like we are crazy. What he does want to sing? Happy Birthday to Jesus. “Christmas is coming…”

He doesn’t like crowds, so shopping is out. So are the Christmas parties. He prefers to have a quiet Christmas Eve helping to bake and decorate a birthday cake for Jesus, complete with candles (which he takes the liberty of blowing out himself).  “Christmas is coming…”

We have stopped trying to read him books about Santa. He has no interest in them. He would rather play with his plastic nativity set while someone tells him about the birth of a special baby. “Chirstmas is coming…”

As for Christmas morning, he will be excited to get up and sit at the tree. The small treats in his stocking will probably be what he enjoys the most. He will take his time, pulling them out one by one and stop to sample each before moving on. He will be quite content after opening one or two presents to simply enjoy what he already has rather than looking for more to open. “Christmas is coming…”

He will turn down the big holiday dinner opting to enjoy something simple like a frozen pizza or even a pop tart instead. He doesn’t need anything fancy. He will be pleased all the same. “Christmas is coming…”

Many people will probably say that my son’s reaction is not normal. They will be right, it is not normal compared to what we have turned modern day Christmas into, but I can’t help but think that my son may be behaving more like those shepherds keeping watch in the fields so many years ago. They were honored to have been the first witnesses of the glorious event surrounding the first Christmas. They were chosen not because they had a special place in society, they were not religious leaders or wealthy individuals. They were probably chosen because they were humble, they were faithful, and they were willing to recognize the importance of the event that was unfolding. “Christmas is coming…”

 There were no fancy decorations. Perhaps they were instead awed by the lights surrounding  the glorious beings from heaven. There were no Christmas carols about reindeer, only the voices of the angels singing praise welcoming the birth of a king. There were no special meals that day, no shopping for gifts, no parties. There was no man in a red suit, only a baby in a manger. The only presents that were sought after was to be in the presence of a Savior. They were there simply to worship the one they knew would save them. That was more than enough for them, and it appears to be more than enough for my son. He is setting the standard for a new norm at my house. “Christmas is coming…”

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angle said to them, “Do not be afraid, I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest , and on earth peace to men on whom his favor rests.” When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.” So, they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.”

Luke 2:8-20 NIV

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